There are many ways your life can change, when you start caring for a person with a chronic illness. Several of the caregivers we interviewed spoke about their experiences of trying to balance many people’s needs at once—namely, the care recipient’s, those of friends and family, and their own needs as a caregiver. They describe how they made time for things that were important to them; or if they had lost the balance, what they did to try to find it again. Most caregivers agreed that a good balance was important to their sense of well-being, but that it was a struggle to find. There was recognition that even when balance was established, it could be easily disrupted as conditions changed, and that one had to be open to this reality.
Marc said, "It is continuously seeking balance, it is a constant search." Ginny thinks that balance in life is something she is still working on; taking the time for herself continues to be a challenge.
Challenges with balancing
The interviewees spoke of a wide range of challenges in finding the correct balance. It depended on a number of factors that included their personal situation, the needs of the care recipient, and the stage of life they were in. Some challenges were more difficult to resolve than others. For example, Ginny's life goes on hold for a little while when her mother has a crisis, until things get back to normal. Sheni started paying her daughter to care for her father, although the Public Guardian, who is supervising her husband's expenses, did not allow this.
Making changes to find a balance
Almost all the caregivers we spoke to needed to make changes in routines, ways of working, and daily responsibilities in order to balance their day and get everything done. These adjustments depended on the caregivers' situation and what was feasible in their circumstance. Several caregivers opted to move to a more appropriate setting, and to reduce or change their working hours. Richard said, "I was the house cleaner, but I wasn't doing a good job. Eventually, Vivienne herself said to me 'Why don't we get a firm of house cleaners to come?' and eventually I succumbed. At first my pride said, 'I should be able to do this,' but then I finally realized, 'this is a lot of constant pressure on me. I'm not doing a great job of house cleaning.'"
Sometimes it required quite a bit of effort to make the right changes. For example, Donovan tried several different approaches for support with the care for his wife. For example, they hired someone full-time for a few years, and then had someone coming in part-time. Now , they have live-in caregivers. However, despite the extra help, there has been no reduction in Donovan's stress and tiredness.
Some caregivers found a better balance by making changes that affected them personally and directly. Rachel, for example, made new friends that were able to provide more support for her. Other caregivers found ways to have more time for themselves or with their partner.
In some cases, people realized they needed to change their way of thinking or their approach to caregiving in order to feel more at ease. Other caregivers were working on increasing their patience. Joanne managed to stop feeling guilty about having her own time, while Marc felt that the caregiving had also led him to appreciate the spiritual dimension of life.
Like Marc and Madhu, other caregivers also learned to make changes. Mike, for example, realized that, in the beginning, he wanted to do everything to help his wife. In time, he noticed that he had to take a step back: "After almost two years now I'm starting to finally realize this, that I actually have to be slacking off and let her do more what she wants to do."